April 2018
Newsletter

The judgement of the Supreme Court pertaining to validity of “advance medical directives” is reassuring. It reiterates the value of life, not only in its length but also in quality, accepting death as the inevitable consequence of life and ensuring some preservation of dignity to its very end.

It is sad to see that the confusion regarding the use of the word “euthanasia” still persists. The word euthanasia refers to an act with the intention of ending a life. How can “allowing natural death” be given the name euthanasia even if we use the prefix ‘passive’? The Indian Council of Medical Research is due to come out with the definition of terms relating to end-of-life care on Monday, 12 March 2018. Let us hope that it ends the confusion, once and for all.

Every life has to end some day. When I near the end of the road, most material things cease to be important. My degrees, my car, my bank balance, all will be useless for me. The only thing that would still be valuable is the love that I give and the love that I receive. The human touch, the kiss on the forehead, some loving words of farewell, they will be all-important. Those are precisely the priceless things that would be denied to me in a cold sterile intensive care unit.

I personally have already prepared a document expressing my wish not to be subjected to aggressive medical interventions when facing an incurable terminal illness with serious suffering. With today’s Supreme Court judgement, my wishes will become valid and legally binding on the medical profession. This means that when the time comes, I now have a chance to go with some dignity, hopefully with some of my loved ones by my side instead of being subjected to inhumane, aggressive, futile treatment. To make this possible, I should have access to palliative care so that my pain, breathlessness or any other suffering can be relieved, my fears or anxiety can be alleviated and that I can be in some peace socially and spiritually too. Just as Canada passed a legislation in 2017 making palliative care a mandatory right, we need to ensure access to palliative care.

It is certainly necessary to put in protective measures to prevent abuse of the provision for advance medical directives. At one look, the procedure prescribed by the Supreme Court appears to be too complicated. When I am in agonizing suffering on a ventilator in a hospital, the hospital board will have to meet, study all documents and arrive at a decision. They then have to inform the collector. Let us hope that he will be free and able to act on that day. He sets up a board which studies the documents and arrives at a decision. How many days will that take? Then the decision goes to the magistrate who has to personally visit the patient and then issue the required order. How long will that take? And all this while, I shall be in that cold intensive care unit in agonizing suffering.

Thought processes in this matter seem to be limited by the sensational cases like that of the late Aruna Shanbaug. But this is not only about the occasional person who goes into vegetative state and stays alive for a long time. This is about thousands of people with terminal illnesses who go on ventilators in tertiary hospitals every day. This can potentially apply to all of the 8.2 million people who die in India every year who can afford to go to tertiary hospitals with facilities for artificial ventilation.

The draft of the proposed law “for protection of terminally ill patients and medical practitioners” is still pending with the government. When it is eventually passed by the Parliament, let us hope a citizen-friendly law emerges.

What legal experts do not realise is that LW/AMD is not a document but a process.

The most important component of this process is what Atul Gawande calls “the conversation”. The conversation is either one or a series of discussions about how people wish their last days to be. Often the simplest is a choice of place of death: home or hospital!

Pallium India is organizing ‘Kuttikkoottam Summer Camp’ for children aged 12 and above, on April 19, 20, 21, at Mitra Niketan, next to Arumana Hospital, Trivandrum. Engaging activities designed to impart knowledge and enhance creativity through fun and games, as well as personality development programs are part of this 3-day camp.

Pallium India currently supports the education of over 350 children. Many of them had been on the verge of dropping out of school, after their families were ravaged by illness or death, and they were financially destroyed. Thanks to constant support from our well-wishers, Pallium India has been able to keep their education uninterrupted, as much as possible.

Since 2011, every year Pallium India’s volunteers have been successfully conducting 3-day camps for these children, during their summer holidays, where they get to meet others from similar backgrounds and forget their troubles at least for a short while.

Please donate!

To provide food, accommodation and gifts for the children, the estimated expense is ₹4000 per child. Our volunteers have been raising funds through food festival and other small events. However, we still have a gap. Please donate and help these children have a good time. No amount is too small. To donate, please visit: http://palliumindia.org/donate/

Dr Rajagopal and Dr Chandrika are on a tour of USA and Canada, attending the screenings of Hippocratic at events organized by palliative care communities in different cities. They are being welcomed warmly everywhere by palliative care enthusiasts.

The India speaking tour of Dr Rajagopal along with Hippocratic screenings will commence in June.

Dr Dan Munday, Dr Ruth Powys, Professor Bishnu Paudel and Professor Rajesh Gongal, explain the background to their longer article published in the January/February issue of the European Journal of Palliative Care.

We are glad to report that Dr Stephen Connor, the head of Worldwide Palliative Care Alliance and a friend and benefactor of Indian palliative care, has been appointed to the WHO civil society working group ahead of the forthcoming High Level Meeting.

Dr M. R. Rajagopal, Founder-Chairman of Pallium India, was honored on March 15, 2018 by American Academy of Hospice and Palliative Medicine (AAHPM) as one of the 30 most influential leaders in hospice and palliative medicine. During the opening plenary session for the 2018 Annual Assembly of Hospice and Palliative Care, held in Boston, MA on March 15, 2018, Dr. Janet Bull, President, AAHPM, introduced the AAHPM visionaries program with a video announcing all the visionaries. The Visionaries were also recognized at the Leadership Reception later that day, where a small memento was presented to each Visionary to commemorate the honor.

Some people and some initiatives bring you strength, when you need it most. Under Dr Suresh Reddy’s leadership, Indo-American Cancer Association (IACA) took it on themselves to support educational initiatives in palliative care in India.

They worked on the curriculum, made it more robust, particularly strengthening the evaluation, and raised funds to support scholarships for palliative care champions from all over the country to participate in educational programs in several locations in India. The poster reporting it won an award at the annual conference of the American Academy of Hospice and Palliative Medicine (AAHPM) in Boston, on March 17, 2018.

As a part of international social work month celebration, the psycho-social team of Pallium India conducted a virtual session for social workers across the country, based on the theme “Enhancing Dignity in Palliative Care through Integration of Social Work values”. 15 social workers from different states joined in via Zoom, and all of them participated actively.

This is the first ever virtual session in the country on Palliative Care social work. We look forward to continuing this as a platform for empowering social workers national level, form networks and to raise awareness on palliative care.

Dr Karen Kayser from Kent School of Social Work, Ms Hee Lee from School of social work, University of Alabama, and Dr Vidubala from Adyar Cancer Institute visited Pallium India and had an interactive session with the social work team and other clinical staff.

They shared their experiences and valuable insights on how they incorporate research in oncology by respecting people’s dignity, and giving voice to patients and families. They are keenly interested to collaborate with Pallium India’s psycho-social team through a training project on doing research in psycho-social aspects of palliative care.

We are grateful for their visit and look forward to working with them.

The Telangana government and the Tata Memorial Trust on Thursday signed a memorandum of understanding (MoU) to set up a network of high-quality affordable cancer care facilities equipped with latest technology across primary, secondary and tertiary public health institutions throughout the State.

PARTING SHOT

When people talk about ‘inclusion’ and ‘diversity’, disability is usually left out. The women’s movement should be the place to change that.

Disabled women are still struggling to find our place in the women’s movement – and high-profile campaigns such as #MeToo are a reminder of what a long way there is to go before we can say that our voices are being heard.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.